How are people with liver mets doing?
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Artisthea-My last scans were in December. My next scans are 2/22. My MO moved them up a month because my CEA went up (but, honestly, my CEA has never been indicative of what's going on with me) My CA15-3 went down 14 points last month which made me really happy because it's always been spot on so I'm thinking the Xeloda is working! But, we'll see after I get my scan results!
Babs
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Babs, I sure pray the Xeloda is indeed working for you. From what I have heard your CA numbers either are spot on or no indicator at all, so that is a great sign. I haven't had my TM's done for almost a month. I get them again on the 22nd, same day as your new scan, so I will be thinking of you on that day! I sort of wish my Onc would move my scans up from end of March. I have been so up and down with liver enzymes and then I changed meds pretty quickly, so I am sort of confused as to where I'm at. Although sometimes ignorance is bliss......
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So, mixed bag on my latest scan results. Liver continues to shrink on gem/carbo and most of lesions necrotic, just a couple of persistent ones. However, cancer has been marching on in my bones, where previously had none. Feeling very disappointed as felt I could cope whilst it was in just one area, even if it was the liver. I now have a few spots in pelvis, right femur and scull. Looks like the chemo is good for the liver but not the bone. Having a two week break from chemo and onc is going to confer with radiologist as to whether bone spots are definitely new. What next I wonder?
P.s. Just had a fabulous week in Singapore, walking round for hours in heat and humidity, eating very dodgy and cheap street food, no ill effects! Am encouraged by this, as at least I feel really well and have loads of energy which has got to be more important than crappy scan results
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Isy, I am very sorry to hear this news. It sounds like you are taking it in stride, which we must do. It's the clear better choice of our two options. I am wondering how often you have a bone scan since your mets were previously just in the liver. Mine are just in my liver and I have only CT scans of chest and abdomen every three weeks. Onc said she doesn't usually order other scans unless their is progression or I have symptoms but that she could order them if I wanted.
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Kaayborg, I had bone scan when first diagnosed back in June but since then only CT scans like you, after every three rounds of chemo. Nothing showed on CT scans and no symptoms. I think onc just thought it was worth doing the full scans this time, so had brain CT as well which I don't normally have.
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Artist,
I am very happy Faslodex seems to be working , i hope they keep sliding
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Taks Woody, me too. I hope it is working on the tumors too. Wish I could still take the Ibrance as well as many seem to be enjoying good results. I don't get another scan until the end of March which is tough. How are you doing these days? Isy, it is so scary to realize how fast things can change. I mean we all know it in our hearts but hope springs eternal right? I know that is so disappointing about the bones but glad you are focusing on the positive. In my mind having shrinkage in the liver almost balances out that bad news about bones.....I have never had a CT scan and wonder when they are used? Hang in there Isy, they may double up on the meds to work on both things at once. Singapore sounds like a blast. I've hardly been anywhere in my life.
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What kind of scans do you get, Artist?
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You and I seem have a lot in common as far as time of diagnosis, mets, and treatments go. I may ask for the additional scans next time. Very interested to hear how your treatment may change in light of this. Wishing you and all the very best.
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we do Kaayborg. May be worth asking for a bone scan if only to put your mind at rest and since bones obviously don't show up on CT scans. From what I gather doc is going to confer with senior radiologist to ascertain if bone mets could have been there originally in which case I would continue on the gem/carbo. If not then classed as progression so onto something new.
Yes artist, I take the bone mets with a pinch of salt (can't believe I just said that!) as reduction in liver more important. I know that bones can be easier to control and live with. It is hard though when you're plodding along fosussing on a particular course, thinking you've got things under control and then bam! suddenly everything changes0 -
Artist-thanks so much! I'll be thinking of you on the 22nd and am hoping those pesky TMs go down a lot!
Isy-I have both bone mets and liver mets. Up until I started Xeloda, my liver mets kept growing. Its the liver mets that scare me the most so having regression with that would be great news.
Babs
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Shetland I have had 2 PET scans since July and 1 initial bone density scan because of Femara. I agree Isy about anting to stay a course. I started on Femara/Ibrance combo and had to stop 3 months in despite an improvement in scans and TM's due to elevated liver enzymes. Now am just on Faslodex and have no idea if it is working until my next scans in March. Scary and frustrating for sure.
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hi liver metsters
Just checking in. Reading where you are all at with this nasty cancer business. Only hoping and praying treatment will knock those mets down for all of us.
I don't know my status until scans end of feb but my kidneys are within normal range (creatinine) the last few months. My liver had stopped aching. Been on 3 weeks on 1 week off gemzar since October. Finally have horrible SE under control with low dose oral decadron during 3 really bad days. I was ready to stop the gemzar; high fever, rash that looked like measles and edemia. Thank God for decadron. Major issue is low reds and Hemogloblin (8.5). Lol. I walk upstairs and I feel like I ran a marathon. Not in a good way. I'm not sure if I will stay on gemzar or switch ; depends on scan. TM did come down from 1300 to 680 and last check it was 680. But I've had two surgeries replacing port as my skin had hole in it. (Can you stand it?) 😱 That would be three ports in a year and half.
Anyway. Wanted to touch base. Only sending hugs and good news for all of us.
Not today cancer. Nope. 👍😘
Diana
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Diana - 3 ports in 18 months?! You should have started a punch card, you're due a free one by now.
Glad the SEs are under control, I'll be praying for you with those next round of scans.Isy - your trip to Singapore sounded great!
I'm plugging along, but things are rough these days. I'm on abraxane, which seemed to be working for a few weeks, but based on my pain I suspect is no longer working. TMs next week, so we'll have more data, but I'm pretty sick. Each day is a little different, but lately I've had a lot of chest pain (referred from liver) and strangely a lot of pain on my left side, including my left clavicle (feels like someone hit me with a baseball bat). I can barely eat or drink because I feel so uncomfortably full. If all that wasn't enough, I have osteonecrosis of the jaw from so many years on Xgeva, so my jaw is painful. My fatigue is overwhelming too, I'm proud of myself if I can do one thing during the day, mostly I sleep. I'm pathetic!
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Nancy glad you checked in.
Doing one thing when you can is a victory. You are inspirational to me. Courage. You demonstrate so much courage.
Well. Sounds like you are really uncomfortable and I hate that. So many of us thinking about you and sending you comfort and less pain. I hear that you are really sick with liver. Sigh
I wish there was something to do to help you.
😘
Diana
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nancyh- I'm so sorry things are so hard for you right now. I hope you can find some relief soon.
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((((Nancy)))) Thinking of you! Wish you felt better.
So many names here that I know and worry about…
Love to you all…
Rose.
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Nancy-hoping you feel better soon
Babs
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I agree steelrose..everyone is on my mind & in my heart. It used to be that as a stage 2 gal, once we all got through tx, our chatter was about family, work, life w/out bc. Now, none of us have that luxury...there is no life w/out bc.
Nancy...your courage is nothing short of amazing. I know that word gets used so much (especially by me), but when you stop & think about what it means, "Astonish Greatly," that is what defines you and your will to live. I'm sad that you're feeling terribly ill...and I know your pain threshold, so it must be awful. I hope they'll find something to control the pain...and of course prayers for healing, above all.
Sending love on this Valentine's Day.
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Nancy and Diana, you both have been through so much for so long, yet you keep going so bravely. Respect and love to you.
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I think of you both often as well. Diana sounds like you are hanging in there. Hoping for great scan news and hope the SE's continue to abate. nancy, what is pathetic is how this disease robs us of our normal lives and vitality, certainly not you. Your posts have helped me tremendously and I am praying that you find these symptoms abating soon and you get some relief. I hate that you are going through so much! Thinking of you on Valentine's Day......
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Thank you, ladies, you really lifted my spirits tonight. I'll keep you posted.
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Nancy, i hope you are feeling better, wishing you comfort and peace.
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Hi All
I have a question for you.
My ALT has been going up, down up etc. but usually within the 14-22 range This past blood test it was 43 which is over the norm. What does this mean?
My AST has been up and down too-usuually 15-22. This time it was 28 which is still in the normal range. Not sure what to make of this.
Appreciate your input
Babs
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babs - My ALT and AST went up considerably about three months into XEloda. For two blood draws (two months) my numbers were almost double what they should be. But then, amazingly, this last month they were back down to normal! I have no idea why they went up, but I did have a scan, and my liver tumors regressed a bit. I don't know if it has anything to do with the enzymes going up or down...it's a mystery. But don't be too worried, as they may go back down. My onc says unless they are about 5x normal, they don't get too concerned. Yours are not that out of whack. I'll bet your doc just watches and says not to worry.
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babs, when I was having trouble with elevated enzymes one was 550 and one was 780!!! Sometimes things can cause small changes like a glass of wine or some OTC's. That is so miniscule compared to what they can do I hope you are not stressing over it...
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Sandilee and Artistathea-thanks for your answers. My Dr. never mentioned anything about these levels to me-so I'm sure she wasn't concerned. I was just curious since for some crazy reason I decided to REALLY look at my last blood tests tonight. I guess I didn't before today because all I saw was thet my Ca15-3 had gone down and I needed to focus on that!
Thanks again,
Barbara
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My doc mentioned wine, too. Apparently one glass of wine can really make a difference in liver enzymes. I haven't been drinking at all since my liver mets, but apparently they can go up and down for unknown reasons.
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Sandilee- I was never a big drinker- maybe a few sips of my hubby's wine once or twice a month. Since my liver mets I haven't touched a drop! So not worth it to me!!!!
Babs
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Babs...I remember my onc was not concerned once when my lactate dehydrogenase was 199...she said it was probably a mishandled blood specimen & said not to be concerned unless it kept going up & up. I don't know about Alt or Ast being higher. Mine are similar to your usual counts..13-15. How often do you have hepatic function tests? As much as I worried about seeing it every 3 weeks, now that I'm having them every 6 weeks, it's harder. How do you get a real scope on zigzagging tests if not regularly done. They may be totally normal, but I'm so much more at ease when they're low, so hoping they'll go back down fast!
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